I have been watching what has been going on here at the Tovaxin forum with great interest but have remained silent on how things are going for me in the study. I received my third injection last Thursday so here is how things have gone for me.
I went in for my first treatment on March 23 and the whole deal was uneventful. As a side note, it was very important that the doctor and the study coordinator not be present when the box containing Tovaxin/placebo vial was opened but they made no effort to prevent me from seeing the vial. So that indicated to me that the Tovaxin containing vial looked different from the placebo containing vial. I do a lot of cell culture work, so that was potentially a mistake on their part. For the first two weeks after the injection things were pretty much as usual with my symptoms. However in the third and fourth week I began to notice that my legs didn’t feel as heavy when I walked and my balance and stability seemed somewhat better. My wife noticed something about how I walked that was pretty interesting. My normal walking motion was to drive my heels down pretty hard and since we live in a house with a hardwood floor over a basement, I wasn’t going to sneak up on you without you hearing my pounding footsteps. But in the third or so week after the injection, I walked down the hallway and into the kitchen and she said that she didn’t hear me walking in like usual. From that point on, it was pretty clear that I was not driving my heels into the ground like I used to. There were several subtle things that were happening as well but the bottom line is that things certainly seemed different and were moving in a positive direction albeit slowly.
I went in for my second injection on April 20 and again things were pretty uneventful. As with the first injection, by the next day there was a barely noticeable red spot left over from the actual needle hole. My left hand has been a little sluggish since a flare up about a year ago and that was pretty evident in the “put the pegs in the hole” part of the EDSS. On the initial visit, the time difference was about 10 seconds slower for my left hand compared to my right hand even though I’m left handed. For this visit though my left hand time was only about 5 seconds slower than my right. Also, unlike the first injection visit, I could control my left leg better and when lying down I could move my heel from my knee to my ankle and back again with relative ease. In the few days following the injection, however, I felt pretty sluggish and a little achy. It was kinda’ like I felt on the day after a Betaseron injection. By day four, post-injection, those symptoms had gone away and I was getting back to the pre-second injection levels. I felt as if my stamina was on the increase as well as my mobility and balance. Several people who know I’m in the study remarked that I was moving much more fluid and stable than they had seen in a long time. I realize that that is not an unbiased opinion but I don’t think people who don’t know you well and don’t know you’re in a study are going to remark that you don’t move as crappy as you used to. My wife and I are building a new log house and we’re doing a lot of the work ourselves. Two weekends ago, my wife, 14 year old son, father-in-law and myself put down 800 square feet of yellow pine flooring. I was certainly able to do my share of the work and even though I would tire out, my stamina was much better than it used to be and if I took a 15 minute break I would be able to get back to work at the same level that I originally started at. By the time the weekend was over, I experienced something that I had not experienced in a long time. My muscles were sore! It used to be that my nervous system wouldn’t work long enough for my muscles to get worn out and sore. But, since my stamina was better, I was able to work long enough to actually wear the muscles out. The tingling in my hands and feet was somewhat better and the sensations in my hands and feet were much better. Sensations are still “fuzzy” but better.
I went in for my third injection last Thursday , May 17. As before, only a small red mark the following day so again no injection site reaction. My left hand “peg in the hole” time was down to about 2 seconds slower than my right. The day after the injection, I was not nearly as sluggish and a little less achy than I was after the second injection. By the next day, I was back to pre-injection levels and Sunday was a great day. We put down the last 400 feet of flooring on Saturday and Sunday and yes I’m sore!
To wrap this long post up, I’m convinced that things are moving in a strong positive direction for me. I don’t think I’ll enter a marathon anytime soon but I, and the people close to me, think I’m doing significantly better.